Timothy Ray Brown: the accidental AIDS icon

The ‘Berlin patient’ didn’t ask to be cured of HIV; now he wants a cure for all
Timothy Ray Brown, the first person cured of HIV, is greeted by members of the community after a defeatHIV lecture at Seattle University in June 2013.
Timothy Ray Brown, the first person cured of HIV, is greeted by community members after a defeatHIV lecture at Seattle University in June 2013. Photo by Bo Jungmayer / Fred Hutch News Service

Timothy Ray Brown became an icon the day he came out as the previously anonymous “Berlin patient” — the first and still only person in the world to be cured of the virus that causes AIDS. But the path to becoming the personification of hope for the 35 million people worldwide infected with HIV has been more challenging — and more convoluted — than many people realize.

The Seattle-born Brown was not trying to cure his HIV infection when he reluctantly agreed to a stem-cell transplant in a Berlin hospital eight years ago this month. The immediate threat to his life was leukemia. Chemotherapy had failed, and the grueling transplant — assuming he survived it — was a last-ditch attempt to cure his rapidly progressing cancer.

Brown will talk about how he came to be cured and why he wants an easier cure for others at a free community event Feb. 26 at 6 p.m. at the downtown Seattle Public Library. He will share the stage with Dr. Gero Hϋtter, the German blood cancer specialist who had the idea of curing both Brown’s leukemia and his HIV infection by finding a stem-cell donor who carried a rare genetic mutation that protects against HIV.

Among the groups hosting the question-and-answer session are Fred Hutchinson Cancer Research Center and the community advisory board of defeatHIV, one of three federally funded consortiums nationwide investigating different strategies for an HIV cure. Based at Fred Hutch, defeatHIV is using Brown’s cure as a blueprint for a new therapy involving modifying an HIV patient’s own stem cells to mimic the genetics of someone with natural resistance.

Brown, 48, is not only the inspiration for the Fred Hutch approach but the reason the three consortiums exist. Until his case, research into an HIV/AIDS cure had stalled. A cure seemed so unlikely that few people even said the word out loud.

Brown’s case changed that – but it hasn’t always been a smooth path.

 “My recovery was complicated,” Brown said in a telephone interview last month. “I became delirious and had to have a brain biopsy done. I’ve been left with some neurological problems that require ongoing care.

“My life is far from perfect,” he added. “But it is still my life.”

The first diagnosis: HIV

An only child, Brown was raised by his mother in Seattle and nearby Edmonds. Openly gay since high school, his first taste of activism was joining ACT-UP protests over discrimination against people with AIDS. In 1991, at age 25 and seeking a change, he moved first to Barcelona, then to Berlin, where he took university classes and worked as a waiter.

In 1995, a former boyfriend contacted him in Berlin to say he’d tested positive for HIV and recommend that Brown get tested too. It was before the discovery of life-saving antiretroviral drugs, and most people viewed an HIV diagnosis as a death sentence. When Brown tested positive, he felt scared and alone.

“The friend who told me I should get tested said, ‘Do you realize you only have about two more years to live?’” Brown recalled. “Of course I was shocked. But I still went on with my life. I started university in Berlin, and acted like everything was going to be OK.”

And in fact, with the introduction of a combination antiretroviral therapy the following year, things did go OK. For those who have access to the drugs and can tolerate them, antiretroviral therapy is one of medicine’s great, lifesaving breakthroughs. At first, scientists hoped that it would even cure HIV. But the virus, which integrates itself into a person’s own DNA, can hide in cells, dormant and undetectable, out of reach of the drugs. Stop taking a daily pill and HIV roars back.

Unlike some people, Brown experienced few medication side effects. His German health care coverage paid for the drugs, and he grew used to the idea that he would need to take them for a lifetime.

He got a new job translating from German to English. For the next 10 years, life was good.

And then it wasn’t.

A second life-threatening illness

In 2006, Brown attended a wedding in New York City that left him exhausted. Upon returning to Berlin, he found he couldn’t even ride a mile on his bicycle, his usual mode of transportation. Several doctor visits later, a bone marrow biopsy showed that he had acute myeloid leukemia, the most common blood cancer in adults. AML interferes with the process by which the bone marrow makes the blood stem cells that mature into infection-fighting white blood cells. Without treatment, it can kill quickly. At age 40, Brown found himself confronting a second potentially fatal disease.

The doctor who had done the biopsy called Charité Hospital, a Berlin university hospital, to get him into treatment. A young oncologist named Gero Hϋtter took the call.

A specialist in blood cancers, Hϋtter had never before treated an HIV-infected cancer patient and had never done HIV research. But he’d read about a rare gene mutation that confers natural resistance to the virus by deleting what is known as the delta-32 section of the CCR5 gene, which HIV latches onto and uses to enter white blood cells. He mentioned to Brown an idea he had – finding a stem-cell donor with that mutation.

For his part, Brown wasn’t interested in “being a guinea pig,” he said. He hoped that first-line chemotherapy treatment would cure his leukemia and he wouldn’t require a risky transplant.

Chemotherapy, he learned, was no picnic. “My brain was kind of fried,” he said. And that was the least of his problems.

“Chemotherapy reminded me that treatment for a deadly disease could be miserable,” he told a San Diego clinical trials advisory board in a 2012 videotaped talk. “It mocked me. What, protease inhibitors [an anti-HIV drug] upset your tummy once? Well, get a load of this: I developed pneumonia early on. I had to stop my third round of chemotherapy halfway through when I developed a sepsis infection. I could have died. Fortunately I had great doctors.”

After recovering from sepsis, Brown was released from the hospital, unable to complete the full chemotherapy course. Still, he appeared to be in remission, and Hϋtter recommended a vacation to recover. Brown happily complied, heading to Italy to visit museums and beaches.

When the leukemia came back in January 2007, a stem cell transplant was his best chance of beating it.

The first transplant

Stem cell transplants, pioneered at Fred Hutch, require a complex match between donor and patient, which can be difficult enough to find. Adding to the challenge was locating a matching donor with two copies of the CCR5 mutation, one from each parent.

Germany, it turned out, was the perfect place to look. It has a large, centralized registry of stem cell donors. And the CCR5 mutation is most common in northern Europeans; about 1 percent carries both copies of the mutant gene. (No one knows why.) Brown had a high number of matches – more than 200. The 61st one tested had both copies of the mutation.

As is typical for a stem cell transplant, Brown underwent “conditioning,” an intense chemotherapy and radiation regimen that destroys the immune system to make room for transplanted immune cells to grow. The stem cell transplant took place on Feb. 16, 2007. Brown stopped taking his antiretroviral medication that day.

He bounced back from the punishing process remarkably well. More astonishing, three months after the transplant, his HIV was undetectable, even though he did not resume his medication.

For Brown, the first sign that he was HIV-free came at the gym. He actually started building muscles again. The wasting syndrome he had developed, common in people with HIV, disappeared.

“That was kind of my proof that it was gone,” he said. “I noticed changes in my body. I quit my ARVs [antiretrovirals] the day of my transplant, and I thought, ‘OK, I guess it’s just not here anymore.’”

He continued to be monitored, and the virus showed no signs of coming back.

The leukemia, though, was another story.

Cures and setbacks

As the year progressed, Brown’s energy sagged and he seemed prone to infections. In Idaho to visit his grandmother and extended family at Christmas, he came down with pneumonia.

“Oh no,” he thought, “It’s happening again.” Tests confirmed that the leukemia had returned.

In February 2008, back in Berlin, he underwent a second stem cell transplant from the same donor. This time, he did not rebound. He required a brain biopsy after becoming delirious and temporarily paralyzed. He nearly went blind. Several years ago, he asked Hϋtter what his chances had been for surviving. “About 5 percent,” he said Hϋtter told him.

Recovery was slow and required time in a rehabilitation center for patients with brain injuries. Brown had to learn to walk and talk again. In 2009, he was mugged on a Berlin street and slammed to the pavement, injuring his head and shoulder and sending him back to rehab.

Around the time Brown had his second transplant, Hϋtter was preparing to submit the HIV results to medical journals and conferences. Considering how famous the case is now, it may come as a surprise that it was pretty much ignored at first. The New England Journal of Medicine turned down a paper from a young, unpublished researcher with no previous HIV experience. The Conference on Retoviruses and Opportunistic Infections (CROI), one of the premier scientific conferences on HIV, invited Hϋtter to present a poster but did not offer him a more prestigious talk. (CROI, held in Boston that year, will convene next week in Seattle.)

In his poster, presented in late February 2008, Hϋtter described the transplant as “a promising approach” to treating HIV infection. He avoided the word cure, in keeping with the caution of the time. He didn’t know whether the wily virus still would in fact return.

The poster, which did not identify Brown, attracted little attention among scientists and no headlines in the general press.

Going public

A few researchers, however, did notice, and in September of that year, invited Hϋtter to a small scientific conference sponsored by the nonprofit Foundation for AIDS Research. The Berlin patient, these researchers agreed, showed “proof of concept” that a cure was possible. Word circulated. In November 2008, The Wall Street Journal carried a story headlined, “A Doctor, a Mutation and a Potential Cure for AIDS.” In February 2009, The New England Journal of Medicine published Hϋtter’s resubmitted paper.

At the time, Brown was still struggling to recover from the transplant and the mugging. Identifying himself as the first person cured of HIV was the last thing on his mind. Still, he gamely submitted to being poked and biopsied from head to toe to test for the virus in his blood, spinal fluid, rectum and “any other place doctors can think of to stick a needle.” He has continued to do so over the years. Samples of his blood and tissues have been sent to laboratories around the world. (Years later, he would meet a scientist from the Netherlands at an international AIDS conference, who told him, “Timothy, I know you intimately. I’ve got 7,000 copies of your blood in my freezer.”)

Anyone might agree that submitting to this kind of scrutiny is commitment enough to an HIV/AIDS cure. But in 2010, Brown decided to do more. He would go public as the Berlin patient.

“I didn’t want to be the only person cured,” he said. “I wanted to do what I could to make [a cure] possible. My first step was releasing my name and image to the public.”

In late 2010, he gave an interview to Stern, a German newsweekly, and then to POZ, a magazine for people who are HIV positive. It was hard to prepare for the instant celebrity. After the first stories were published, he returned to his apartment, where a friend told him that tabloid reporters had been knocking on the door all day. When the reporters returned, Brown slipped out the back door to avoid them and crossed the street to catch a bus. When a woman approached him and asked if he was Timothy Brown, he said no.

More stories followed, and around that time, Brown returned to live in the United States.

Today, he treads a line between lending his face to the cause of curing HIV/AIDS and protecting his private life and a boyfriend who prefers to avoid publicity’s glare. For example, he would rather not say exactly where he lives, only noting that he has recently moved from the Las Vegas area to Southern California.

He lives simply and stays busy with cure advocacy. Although his speech and mobility have improved greatly, he has been unable to resume his translating work. His eyesight has not completely recovered; his shoulder remains frozen from the mugging injury. He doesn’t drive. Asked if he would go through what he went through again to be cured, he hesitated before answering.

“I like to think I’m altruistic, but I do not know if I’d want to go through it again,” he said. “I’m very much hoping that curing HIV can be done in a much easier way, in a way that’s not so hard on the body.”

A cure for all

Everyone agrees that Brown’s complex treatment would not be appropriate for the vast majority of people with HIV unless they faced a similar life-threatening cancer. Not only is finding a suitable donor difficult, but the costs, both physically and financially, are high.

The challenges Brown faced were underscored in a letter by Hϋtter published last December in The New England Journal of Medicine. He detailed researchers’ attempts to repeat the cure on six other HIV-positive patients with cancer. In all six cases, the patients died from the cancer or from transplant complications. Five of them died too soon after the transplant to know whether their HIV was cured. In one case, the patient harbored a strain of HIV that uses a different “doorway” to enter cells – CXCR4 instead of CCR5 – and that strain rebounded after the transplant.

Brown himself has learned that he could possibly become reinfected should he be exposed to the strain of HIV which, though less prevalent, does not need the CCR5 receptor to enter into cells. Fear of the virus coming back is no longer just about his own health.

“I feel like there are a lot of expectations for me,” he said. “There are certain things I have to make sure don’t happen. There is a very, very slight risk [that I could become infected again]. I think that if I were to become positive again, everything would be a failure. I know that cannot happen.”

Brown, who will celebrate his 49th birthday on March 11, finds purpose and community in being involved in cure research, both as a participant and as an advocate. In 2013, with activist Dave Purdy, he co-founded the Cure for AIDS Coalition, which publishes the Cure Report. He is hoping to start a registry of stem cell donors with the CCR5 mutation. And he continues to work with cure researchers. Of the Fred Hutch program, he said, “They’re doing great work, and I hope they continue to do it.”

He knows that his treatment is not about to become commonplace. But he takes pride in having spurred more research into finding a more readily available cure.

“Basically,” he said, “what I get out of it is peace of mind knowing I’ve done what I can to help bring about a cure for HIV.”

Timothy Ray Brown and Dr. Gero Hϋtter will speak at a free Q & A  session from 6 to 8 p.m. on Thursday, Feb. 26, at the downtown Seattle Public Library. In addition, the public is invited to learn about the state of HIV cure research in three free one-hour classes on Saturday, Feb. 21 from 3 to 6 p.m. For more information, see the Seattle Public Library web site.

Mary Engel is a former staff writer at Fred Hutchinson Cancer Center. Previously, she covered medicine and health policy for the Los Angeles Times, where she was part of a team that won a Pulitzer Prize for Public Service. She was also a fellow at the Knight Science Journalism Program at MIT. Follow her on Twitter @Engel140.

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